I feel like I was blind-sided at the GI doctor’s office today, and I feel foolish because I should have been prepared for this conversation. I just had no idea we were already at this point. We discussed putting a g-tube in.
Kiran uses his NG tube at every feeding. It has been weeks since he has taken the entire volume he needs by mouth. More and more lately, he has been refusing entire bottles, and we have to put it all down the tube for him to get the nourishment he needs. It has been a hard process to experience, but we are developing a new rhythm to our feedings.
In some ways, the NG tube has become more stressful. We have figured out good taping tricks, so he hasn’t yanked it out of his nose in awhile (thank goodness!) but we have had other drama with the whole thing (I am fairly certain I blogged about our ER visit a couple weeks ago, the nurse’s inability to confirm placement, and maybe even the fact he has a long torso so doesn’t measure normally to know how far the tube needs to go in). Every time we have to switch the tube out or even re-tape, it’s a VERY emotional experience because Kiran gets VERY mad about the whole thing. It’s tough for me, as a mama, to have to help with it – and I’m never the one actually putting the tube down!
But it’s also gotten easier in some ways. We have learned two ways to check placement and are pretty comfortable doing so. We have our little stations rigged up on his crib and high chair so we can gravity-feed without having to hold the tube (This works well, because I can read to him, sing to him, get dishes done, etc while he’s finishing a feed!) It’s just become our new normal, stressful and time-consuming as it can be.
And now another curve ball that I really should have anticipated. A g-tube is a feeding tube that is surgically placed directly into the stomach; it would be a little button on his belly, basically. It is a more long-term, sustainable solution to feeding issues. It has a lot of positives from what I am gathering, both from the GI doc and surgeon and the heart moms in my support group. It makes sense to me. It seems like a logical next step for him to continue getting the nutrition he needs to grow strong and healthy.
But man. Is it overwhelming! Another change. More decisions to make. More medical stuff to learn and manage on a daily basis. I know this will be the trajectory of his life, but sometimes I wish…well, I wish a lot of things, I suppose.
He’s a trooper. He’s giving it his all, and he is one tough kid. We will do what it takes; we will make the best decision we possibly can for his well-being. It’s just so hard watching him actually get sicker and need more support…it’s all so real now.